Treating adrenal tumor with Lysodren

[maggiesmomma]

Hi all! Is there anyone out there who did not opt for surgery and is treating their dog with Lysodren? If so, can you tell me how it is going? Maggie is in day 7 of the loading phase at a low dose of 125mg. twice a day. Dr. B. wanted to load her at a low dose for a longer period of time. No problems yet...I am so hopeful this will work, as I am afraid of the surgery. Any comments would be most appreciated. Regards,Jeanie

[Dennismom]

We too decided against surgery. We were afraid our 11.5 year-old Schipperke would not survive it. He has been on Lysodren for 13 days, also at the low dose of 125 mg. We do not see any improvement so far. We have been monitoring his water, and I got very excited when it went from 3500 mg or more per day to 2620. But then it went back up to 3390. Sigh. But at least we have not seen any bad results so far.

Our vet is thinking of upping the dose, but wants another ACTH stim test first. We'll do that early next week and see where we are. I hate this horrible disease.

[acushdogsmom]

Hi Dennis' Mom,

In another message posted here today you mentioned that the high dose dex suppression test done on your dog was inconclusive (although that might have been due to a miscalculation of the dose of dex which was injected). So I'm wondering, how does your Vet know that Dennis has an adrenal tumor if the high dose dex suppression test was "inconclusive"?

Did your Vet do an ultrasound exam to have a look at the adrenal glands?

[Dennismom]

The vet who did the testing "thought" it was adrenal, but there wasn't complete supression. From what we have been told, it seemed the only reason to know for sure whether it was adrenal is to decide on surgery. Since we decided aginst surgery -- at least for the time being -- we decided to go for the ACTH test instead.

Part of the problem here is that we are away from Dennis' home vet. The vets where we are have been doing test after test but not prescribing any treatment. They keep telling us we can wait. We were feeling deparate about doing something because he was going downhill so fast, and we didn't feel like we could wait at all. I have been talking to my home vet, who is also a good friend, by e mail. In fact, she suggested the possibility of Cushings in the first place.

She said we could at least start him on Lysodren right after the high dose dex test, regardless of how the test turned out. So we did. She said she'd rather have the ACTH test now than the high dose dex test.

Dennis had an ultrasound when they thought his high liver enzymes levels were evidence of primary liver problems. Now we realize the Cushings is the primary problem. The vet couldn't see his adrenals when she did the ultrasound, and we were told we'd need to go somewhere with better equipment to see them.

Fortunately we will be visiting in Ohio soon and I have made an appointment with the OSU Veterinary School. I hope we'll be able to get some answers there. Somebody said a specialist is very expensive. Does anyone know what "very expensive" means?

I think one of the worst parts of this disease is being caught between options and feling like we're making decisions without enough information. It's so stressful. I think I'd like to try Trilostane, but hate to have to worry about importing, dividing pills, and being pretty much on my own with it, especially if the Lysodren works. So I don't know whether to order it now or wait till after OSU. This is driving me crazy, especially since poor Dennis isn't getting any better.

[denni50]

Dennis Mom:

If you haven't started Dennis on Lysodren yet hold off
until you get him to the OSU Veterinary School...which
I hope is real soon.

The ultrasound needs to be taken before Lysodren
therapy begins..if indeed Dennis has an adrenal tumor.
Lysodren erodes away the outer cortex of the adrenal
gland, where most tumors begin...and it is highly probable
the tumor may or may not be detectable if an ultrasound
is performed after Lysodren therapy has begun.

When you get Dennis to OSU explain to the attending
vet(s) or specialist that it is imperative that clear
pictures be taken of the adrenal glands(and of course
other organs too).

My dog Scruffy was diagnosed with an adrenal tumor
(conclusively confirmed via ultrasound) 18 months ago
and is thriving well on Lysodren therapy. We opted
out of surgery at the time of her diagnosis due to my
unemployment.

Once Dennis is confirmed to have an adrenal tumor
via the ultrasound(one gland will be small and shriveled
while the gland with the tumor should be enlarged and
clearly show the tumor)...Lysodren will be the recommended choice for medical therapy if you decide
not to have the surgery done at this time.

Anipryl nor Trilostane will control Cushings that is
adrenal dependent. I have yet to find any research
supporting the use of Trilostane for ADH Cushings.

Your first priority is to get the ultrasound done at OSU
as soon as possible...once you have confirmed what
type of Cushings Dennis has then and only then can you
and your vet make an informed decision on getting
Dennis on the right course of treatment and on the
path to feeling better.

hth...Denise

Maggies Mom:
My dog Scruffy has been doing extremely well on
Lysodren Therapy for treatment of an adrenal tumor.
She's 12 years old and has now been on Lysodren for
18 months. We were extremely fortunate in that Scruffy's
tumor responded well to the therapy at lower doses
than what most other dogs here are taking for Pituitary
Cushings...and for 16 months she was doing wonderfully
on 1000 mgs per week.

We had to do a re-load last month...she began showing
symptoms again...ravenous appetite, gulping gallons of
water, panting..etc. Although her ACTH Stim showed
a post number of 4.8...we felt(her vet and I) that
perhaps those numbers are considered too high for
adrenal dependent Cushings and we re-loaded her to
get her numbers back down to 2.7...where she now feels
good again and all symptoms have disappeared.
Her new maintenance dose is 1500 mgs per week
spread out 3 times a week.

My vet commented that she has another Cushings
patient with an adrenal tumor who is going on 4 years
of Lysodren Therapy and doing quite well.

hth....Denise

[maggiesmomma]

Hi Denise! I am SO GLAD you saw my post. I had been hoping to hear from you. I hadn't seen any posts from you lately, and I was afraid maybe Scruffy was not doing well. So glad to hear she is doing well. How much does Scruffy weigh? Maggie weighs 16.9 lbs. , and we are only giving her 250mg. per day during the loading. I noticed a subtle change in her eating this morning...she took a little more time, so hopefully, she is close to being loaded. How long was it before Scruffy' symptoms decreased? Was it during or after loading? Did some take more time than others? We are doing the ACTH stim test on Thursday, which will be day 14 of the loading, unless there is a bigger change tomorrow, then we can do it tomorrow. Thanks so much for finding me, and I may have more questions later. We "adrenal" folks are pretty rare, and we need to stick together. Oh...one more thing. How large was/is Scruffy's tumor. Was it on the right or left gland? Have you had another ultrasound to see if it has grown or changed? Thanks, again...best regards, Jeanie

[sachimom]

Jeanie,
Just checking by to see how Maggie is doing. Hope all is well with you both.
Take care, Mary Ann

[maggiesmomma]

HI Mary Ann; Thanks for your concern. I am getting ready to take Maggie to the groomer, but I will post a new topic when I return. We had the ACTH stim test on Thurs., and she is still not loaded, after 12 days. Previous numbers on 8-27 were 13.8 pre and 43.6 post. Thursday's numbers were 7.3 pre and 65.1 post???? Dr. B. said that could be because of the time of day. I'll get back to you. Regards, Jeanie

[acushdogsmom]

Hi Jeanie,

Not sure why the stim test numbers would go up instead of down, but it might be that the lower than usual loading dose might need to be increased in order to work better to get the numbers down more.

It's true that cortisol levels can be higher at certain times of the day, or if the dog is feeling somewhat more stressed than usual at the time when they draw the blood samples, but if the numbers don't come down soon, ask the Specalist about increasing the daily loading dose.

You can split the daily dose into half of it in the morning with breakfast and half with supper in the evening, so the daily dose isn't given all at one time. You could also ask if you can give Maggie a smal weight appropriate dose of Pepcid AC about 15 minutes before the meal where she's getting the Lysodren dose, because that would most likely prevent tummy upset from the Lysodren (in case you and the Vet are worried that a larger dose of Lysodren might cause tummy upset.

Hang in there and stay in touch. I bet everyone here is thinking about you and Maggie every day during the loading.

[maggiesmomma]

Hi Cushy; Thanks for your reply. I may try the Pepcid AC, although the tummy gurgling seems to have subsided. Please check my most recent post : ACTH stim test done/not loaded for more information and my reply to you. Best regards, Jeanie